Eleanor Garrow-Holding and I have had the pleasure of working together for many years, especially when she worked as the Vice President of Education and Outreach for Food Allergy Research & Education, Inc (FAAN) and when I was a featured speaker for the FAAN conferences (amongst other projects).
Recently, sensing a need for deeper community engagement and outreach, Eleanor and her team have created the Food Allergy & Anaphylaxis Connection Team (FAACT). I had a chance to get the scoop from Eleanor all about FAACT:
Allergic Girl: Tell us a little about you, Eleanor?
Eleanor Garrow-Holding: I have worked, educated, and advocated in the food allergy community for almost 10 years. I was inspired to start this work after my son, Thomas, was diagnosed with life-threatening food allergies to tree nuts, peanuts, wheat, and sesame; eosinophilic esophagitis (EoE) triggered by milk and wheat; asthma; and environmental allergies.
After Thomas was diagnosed in 2004, I established a food allergy support group in a southwest Chicago suburb, Parents of Children Having Allergies (POCHA) of Will County, focusing on education and advocacy; chaired the FAAN Walk for Food Allergy in Chicago in 2007 and 2008; was awarded the FAAN Muriel C. Furlong Award for Community Service in 2008; and advocated in the Illinois state legislature on food allergy and EoE issues. Thanks to the efforts of myself and other patient advocates, legislation to ensure insurance coverage for elemental formulas was signed into law in 2007 and legislation establishing food allergy management guidelines for Illinois schools was signed into law in 2009.
I joined the Food Allergy & Anaphylaxis Network™ (FAAN) in 2009 as Vice President of Education and Outreach, where I oversaw educational initiatives, all food allergy conferences, the Teen Summit, Camp TAG (The Allergy Gang), a Teen Advisory Group, support group development, and more. I advocated for the Food Allergy & Anaphylaxis Management Act (FAAMA) in Washington, DC, with her son Thomas as part of FAAN’s Kids Congress on Capitol Hill. I also advocated on Capitol Hill for the School Access to Emergency Epinephrine Act. I’ve conducted numerous radio, television, and print interviews on food allergy issues and wrote articles for Allergic Living and Living Without magazines. I presented at national and regional conferences about food allergy management in school and restaurant settings and educated personnel in schools and school districts across the country on food allergy management in school. I have also educated staff from numerous food industry companies and entertainment venues about food allergies, such as McDonald’s Corporation, The Hain Celestial Group, Mars Chocolate North America, and all SeaWorld Parks.
In 2013, I joined the Cincinnati Center for Eosinophilic Disorders (CCED) as Senior Specialist of Program Management at Cincinnati Children’s Hospital and Medical Center. There I led day-to-day clinical operations, clinical research projects, program development, marketing, and development.
Now, as CEO of the Food Allergy & Anaphylaxis Connection Team (FAACT), I provide leadership, development, and implementation for all of FAACT’s initiatives and programs, including Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that I founded in 2009.
AG: Tell us about why you created FAACT?
EGH: Since my son Thomas was diagnosed with food allergies almost ten years ago, I've been blessed to make connections with families across the country living with food allergies. We helped each other cope with the emotional roller coaster of food allergies, sharing everything from recipes to safety tips and how to deal with food allergies at school. I appreciate so much the support of food allergy groups and advocates nationwide and all the wonderful work they do. I came to realize, however, that there was no way to connect these groups together to share the lessons learned through decades of living with food allergies. That was my "Aha!" moment – and the day I began creating the Food Allergy & Anaphylaxis Connection Team (FAACT).
I wanted to create a place where you can find the information you need right now, the legislative initiatives that will help your family in the future, the truth about your rights and your child’s rights at school, programs for the entire family, and more. I’m thrilled that FAACT can be that place for you and your family – your home and voice for food allergy awareness.
AG: How is FAACT is different from other national food allergy national non-profit organizations?
EGH: FAACT is a national nonprofit focused on education, programs, civil rights advocacy, government relations, awareness, support group development, and more. Providing conferences regionally based throughout the country gives many families the opportunity to attend, learn, and meet others. FAACT is the first organization to focus on civil rights advocacy in schools and have an attorney leading that initiative. The Leadership Team members are all experts in their fields, but also have personal connections to food allergy and anaphylaxis. Everyone has a child/ren with food allergies. FAACT's Board of Directors all have a personal connection and are well known in the community. FAACT has a world-renowned Medical Advisory Board, which is an interdisciplinary board with board-certified allergists, psychiatrist, psychologist, and we will be adding RN's and RD's. Having the psychological, nursing, and nutrition component is very important and an absolute need!
AG: What is the FAACT mission?
EGH: FAACT's mission is to educate, advocate, and raise awareness for all individuals and families affected by food allergies and life-threatening anaphylaxis. FAACT is also your voice for food allergy awareness.
AG: How will FAACT fulfill its mission?
EGH: FAACT will be focusing on many initiatives. Keeping children safe at school, responding to food allergy bullying, dealing with workplace issues, providing school and restaurant education, and offering education and civil right advocacy resources and tools at your finger tips. FAACT has all the facts you need to manage food allergies and stay healthy. FAACT is here to support you in managing your food allergies – today, tomorrow, and into the future.
AG: What can we look forward to in 2014 from FAACT?
EGH: FAACT is offering four food allergy conferences this year in Anaheim, Atlanta, Denver, and Philadelphia. The conferences offer education and support for parents, grandparents, school personnel, caregivers, healthcare professionals, and teens.
There will be a teen conference in Chicago (Date to be determined). The teen conference weekend is all about teens, their siblings, and their parents. The weekend offers an informative program full of fun activities. Teens will learn about managing their food allergies and, more importantly, spend time with peers who have food allergies.
Camp TAG (The Allergy Gang) will be held in Williamstown, NJ the week of July 28 through August 1. Camp TAG provides a safe place for children with food allergies and eosinophilic disorders and their siblings to have fun – with no worries about allergic reactions – and meet other children who share similar experiences. It is a bonding and empowering week for all campers, including parents.
There will be many programs and materials developed this year, so you will have to stay tuned.
AG: What aspect of FAACT are you most excited about?
EGH: I'm most excited about helping all the families and individuals who are affected by living with food allergies. Connecting with them is very important to me and always has been. Knowing that I've helped one family or person means the world to me.
AG: How can we find you online?
EGH: FAACT Website: www.FoodAllergyAwareness.org
How can we find out more?
Our website, FB page, and Twitter account.
Email Eleanor at Eleanor.Garrow@FoodAllergyAwareness.org
Email FAACT at info@FoodAllergyAwareness.org
Thank you Eleanor, can't wait to see more from FAACT in 2014!